Is living with and managing sarcoidosis without steroids feasible

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Only treatment I've been offered.

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  • Posted

    Hi Rachel,

    I tried really hard not to take steroids when I was first diagnosed, but my symptoms began to make just ordinary things difficult, like walking across a room without getting painfully out of breath. The consultant I was seeing at the time told me that, if I didn't take steroids "he would not be responsible for the outcome." The problem is that the ***** condition can permanently damage your body, for example causing lung fibrosis for which is no cure, and there are other potential complications. In the end, it's your choice, no one can make you take them. 

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    • Posted

      Fortunately my breathing has not been that bad but the lack of mojo has been terrible at times. Pruning my roses nearly finished me off! I am now beginning to realise that perhaps I've been let off lightly.
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  • Posted

    Hi Rachael

    I have been on steroids for 16 months for my Sarcoid. When i was first told I needed them I was totally against them. I didnt want them and asked for alternatives. I not only had Sarcoidosis, I also had complications from other infections in my legs. When I asked what I could have instead I was told there wasnt another treatment that worked for it. Ii asked what would happen if I didnt take them. The reply was 'you dont want to know what will happen to you..'

    I have taken the steroids everyday as you have to. There have been a few occasions Ive forgotten to take my medication - and boy do i know Ive not taken it. Wheasing, breathless, tight chest etc. |I am now on the final push of steroids, Im down to 3mg a day - taken me 16 months to get to this. IM seeing the consultant on Friday and hoping to go down to 2mg. I'd been on a high dose a the start.

    Over the time I will admit the side affects really have affected me. But... i'd rather endure the side affects than risk further lung fibrosis or it affecting my heart or spreading to major organs.

    Like the other responder says, its up to you. My Sarcoid was pretty severe and I know I couldnt function easily without the medication. I also take Hydrocloxocloroquine 200mg twice a day for Sarcoid. It comes down to how severe your sarcoid is, whether you are willing to risk further damage or can easily manage it. My colleague had a mild case about 10 years ago, was on steroids for a short time and functions well and is slim and fit now.

    How I approach it is, and i remind myself when it gets me down is Do I want quality of life or quantity of life? I want both. But to get quantity of life ihave had to put quality on hold so in the long run I can have both. If I hadnt taken the steroids then I quantity and quality arequickly diminishing

    Hope it helps

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    • Posted

      Think I have been lucky then because I've not had as bad an attack as you have. I now feel fortunate that whilst mine keeps coming back I can keep it at bay by listening to my body(strange but true) My GP & I discussed at length the pros & cons of the steroids & in the end decided I can manage without unless I have a major deterioration in which case We will reconsider
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    • Posted

      Sounds a good plan Rachael. I'd avoid them if possible, but you will know as and when you will need them. I have good days and bad and now the good out weight the bad. Listening to your body isnt strange. Especially with Sarcoid. It completely tells you whats what, and says hey pal enough. Sometimes its like someone pulls the plug out and I cant do a thing. Expect to feel rubbish, expect to feel out of breath but it does get better. honest. A year on I cant believe im saying that but its true. I approached mine as a positive life change. Before I had a mad and crazy life putting 25 hours a day into an 8 day week. Not any more. When I run out of energy thats that. I learnt the word No, so someone else does things. Its been liberating, but you find your limits. Little jobs take ages, but so what. It can be so frustrating at times but find the things you can do, choose your daily battles and take each day as it comes. Life could be worse
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    • Posted

      Thank you for your vote of confidence. I have been close to taking them but given that you have to carry a card when taking them and the medics don't really know how they work I'm sticking with herbs and gut instinct! I wish you well
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    • Posted

      have you seen a specialist? the fact it recurs, I would want reassurance. I was led to believe the more severe the attack the more likely it is to go away permanently, so here's hoping.... IM not going though this hell for nothing! it can take up to 10 years to go from what i understand, depending on the type you have. A friend has it in her skin and has had it 15 years and knows the long term prognosis is different to that of my version which is in my lungs. \not trying to scare you, and as you say you seem to have had a easier case than me. As for losing your mojo, yes i know that one. Count your blessings, focus on what you can do. I was in hospital 24 days and when i first came out it would take me 3 hours to have a shower, wash my hair and get dressed. No make up, still wet hair, just through sheer exhaustion and weakness with Sarcoid. Least I can dry my hari now!!!!. Its not easy, its no fun, but you can do it!
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    • Posted

      Don't have a specialist here but yes it has affected my lungs keep having X-rays which confirms that I still have it 10 years on! I can remember sitting on my wall crying because I was exhausted from pruning my roses! Hardly a Herculean task but through sheer bloody minded ness I got it done even though I felt like I had felled the Amazon rain forest! My mother had sarcoidosis too but her symptoms were totally different to mine. Hospital thought it didn't run in families until they saw my X-ray! Then told me that actually patients know more about it than they do as they never get 2 patients present with the same symptoms and we have to live with it so know what to look out for. Heigh ho!
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    • Posted

      I completely agree, we know the symtoms best, and we teach them what is what. I must say I have a most superb consultant who is very supportive. I was told the more severe attack the better you get over it, the longer term and recurring is more a concern. But who knows. I had 4 serious infections and they have affected my leg, and i was treated as a special case in hospital as the complications were rare and unusual, hence getting the top specialist and I know ive been used in research. Doesnt help us though. As you say hey ho, lets struggle on
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    • Posted

      Perhaps that's why I keep having chest X-rays as mine has never really gone away and I'm convinced the chest infections sinus infections & ulcers on my eyes are all related. I certainly never had these health problems before the sarcoidosis. I just get on with it as they say and hope that the next chest X-ray will be clear!
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    • Posted

      im sure they are. Thats the only way isnt it, just get on with it. Life is for living, even though it can be slower or through heavy breathing . Fingers crossed for the next x-ray
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    • Posted

      Hi Rachael, I know this thread was a while ago but I'm reading lots as I'm a newbie! Do you mind me asking about your eye ulcers? Are they corneal ulcers? I have had these since 2001, my eyes gets really stingy and sore and you can see the small white ulcers on the brown bit of my eye. I don't get them all the time but they give me steroid drops at the eye clinic, or occasionally they have cleared up on their own. They always ask if I wear contacts ( I don't ) cos that's the most common cause. Just wondered if yours were similar? X 
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    • Posted

      Fraid not! I've asked about them before but been dismissed as no connection to sarcoid which I don't buy! I don't get them all the time but it's odd that my sinus problems have started since the sarcoid and I see ENT in the next couple of weeks. I don't wear contacts either so will keep you posted
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  • Posted

    Not sure what is going on but I am rachael88657! So maybe I will end up talking to myself?
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  • Posted

    A quick update anyway! It seems that my ongoing sinus problems, chest infections are to do with sarcoid but there is nothing they can do! It was thought I might have Sjorgrens syndrome but that came back negative. It's been back to back infections this winter so am praying for the warmer weather when hopefully things will improve. Hope the rest of you are fighting fit!

    Rachael

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